The BabySibs Consortium: Important Findings Ahead

Posted by Alycia Halladay, PhD, director of research for environmental science, Autism Speaks

Last week, Autism Speaks High Risk Baby Siblings Research Consortium made the news with the findings that autism recurs in families much more frequently than had been realized.

Autism’s recurrence within families is of tremendous interest to both researchers and families, and our “High Risk Baby Siblings Research Consortium” continues to study this and other important questions regarding the risks, causes, prevention, and early treatment of autism.

So I’d like to take this opportunity to tell you more about this remarkable group of researchers and their ongoing research–made possible in no small part by your volunteer and donor support.

We support this research consortium in collaboration with the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). In 2003, Alice Kau, of NICHD, and our own VP of Scientific Affairs Andy Shih organized the consortium. I joined with a leadership role in 2005. Since then, the group has grown to include 25 leading autism researchers across 21 medical centers in the United States, Canada, Israel, and the United Kingdom.

They all share the goal of studying the earliest symptoms of autism spectrum disorders (ASDs). They are able to do so because of the generous participation of families with infants and at least one older child on the autism spectrum. These families are so important to research because of the relatively high likelihood that autism will recur among younger siblings.

By following the development of these young children, our consortium researchers are able to do much more than give us more accurate information on recurrence rates. For example, they are making exciting progress in increasing understanding of how and when autism signs and symptoms first appear. This includes insights into the pattern we call “regression,” which involves a loss of skills in an infant or toddler who appeared to be developing normally. As a group, the consortium has published a number of articles to help guide pediatricians and other primary care doctors in how to approach children and families already affected by autism. Their research into early signs and symptoms, for example, has helped clinicians diagnose and provide treatment as early as 12 months of age.

Several of the Baby Sibling Consortium researchers also participate in another important Autism Speaks group, the Toddler Treatment Network. It has a deeper focus on early signs and symptoms, particularly as they relate to developing earlier interventions that may actually prevent the development of some or all autism symptoms.

Families with recurrent autism are crucially needed to help our researchers identify the genes and other influences that increase the risk that children will develop autism. By allowing our researchers to track progress beginning in pregnancy, for example, families provide insights into such risk factors as parental age at conception, and maternal infection and nutrition during pregnancy.

Our researchers are also tracking brain development and identifying so-called biomarkers (such as distinctive brainwave patterns) for earlier and more accurate diagnosis. And, yes, this research can also help us look at whether certain patterns of vaccination make any difference in the risk of autism among children genetically predisposed to the disorder.

Taken together, a better understanding of early signs and symptoms has led to earlier, better accurate diagnoses of ASD along with important knowledge of what causes autism. This research is not possible without the group working together, and without the valuable support of the National Institutes of Health, and most importantly, the families who donate their valuable time to this research.

Interested in learning more—and perhaps participating in the research? Please check out our list of Baby Sibling Research Consortium researchers and contact one in your area.

I love the Baby-Sibs study am very thankful that our Baby-Sibs center is completely open to listening to all sorts of issues, ideas, observations and, most importantly, treatments in infants and toddlers.

On another topic, I love ALL of the regression findings to date on the explosive head overgrowth/bowel kids. :) I cannot wait for you to identify this subset concretely – not so that they are aborted – so that they are treated appropriately/on a different schedule from birth.

You’ve inspired me to really get back in the game for the Walk Fundraiser (we let our enthusiasm slide this season), we’ll be back next season.

we did a genetics study with University of Michigan..we were lucky to be involved as my son is an only child and they don’t take very many single children families. I think the more any of us can do that have children on the spectrum to help other families is great!!

I just want to say “Thank You” for listening, especially to our vaccination concerns and whether they could be causing inflammation in the body and brain or interfering with brain development. We ALL have to remember that the brain is trying to develop and double in size in the first year. Also, most people don’t realize that it takes 3 weeks for the baby to develop the blood brain barrier and the recommended vaccine schedule calls for a Hep B before this develops. MANY of our kids have immune dsyfunction. I would like to know why and was this a reaction to the vaccines, are they born that way and vaccines set all these medical issues off and if they will come up with a test for whether a child to delay or skip vaccinations. They don’t work for 100% of our population and only 1 in 100 children would not be a lot of children to “medically exempt” if there is a potential REAL RISK, which I feel, there is. My child had a lot of inflammation with his shots and got sicker. I’m glad that we are not be degraded and talked down to. I’m glad we are finally being seen as the observant parents who are noticing the “regression” before MOST of the Dr.’s BTW I’m one of the parents who Told My Dr. my child was getting sicker with vaccines and at 12 months suspected something was wrong. We are educated and informed parents who are observant and concerned that vaccines could be triggering more challenges and difficulties for our children to communicate, behave and be in tune with their bodies. We took part in a YALE study with his sister. She did show early signs of Autism but more of Anxiety (which seemed to go hand and hand), she was serious and not babbling. Today (she got a year of Speech) she is talking more than most kids her age and her behaviors seem to be on par. Her only obstacle right now is “sensory”. Good Luck to all and Get Involved. We can Solve This and Prevent some Children from going through the extremes of Autism. I TRULY believe that in my heart. I do believe our environment and things in it are making matters worse unless the child is in the 25% who are born this way (without drugs being involved). Time to Make Medical Vaccination Exemptions for the Siblings especially if it makes a HUGE difference. It DID in our case.

By the way I’m ProLife and I believe in Live and LET Live. I am talking about preventing “regressive” Autism by giving a medical exemption to the kids who will MOST likely suffer live long damage from vaccination. THESE are OUR kids!!!! We need to Protect them. No one’s live is disposable or at the disposal of society in the name of Health! We need to be heard – people are suffering and it can be prevented. Get the testing and NOTE high risk for medical exemptions (like Guillian Barres). Just Do It!

Hi, I have a 9yr old son with moderate-severe autism, I had him when i was 19 (7 weeks off being 20), he is my only child. I split from his father at 21. I have been with my current partner for 7 yrs and think its time we have a child or 2 together. I was wondering what the chances are of me having another child on the spectrum are, given that the father is different?

I think it depends on if you think the child’s Dad might have HF Autism. That would make a big difference (I was told my husband did the same finger flapping and had OT, SP, PT when he was little). I have an older son, by a different Dad, the older child is social and not Autistic. You can have your child followed by these studies and it helps but YOU need to be observant. Different Dads could certainly Lower your Risk (depending on whether this new person is very social and has quirky things about them ;o).

These studies are hugely valuable to families w/ 1 ASD child. I was taking my second son to specialists constantly, because, like many of you, I was tortured by every autistic seeming movement, action, behavior…Reassurance and guidance helped a lot. After those visits I could sleep at night.

However, according to PubMed there are already 420 published studies on Autism and Baby Sibs. These giant studies are hugely expensive and often yield little useful info and lots of bad news. Stop having kids and don’t take any meds wile pregnant isn’t empowering. We need SPECIFICS on environmental triggers- issues we can do something about.

Very glad to hear AS is encouraging EARLI to take vaccination data. Over vaccination is one of the few issues we can 100% change- unlike our genes or mercury emissions from China or the number of coal burning power plants. Also this happens to be a lot easier to to change than dealing w/ the earliest of early dx. How about no dx, that would be the best situation of all.

I agree re: not vaccinating the younger sibs of a progressively vaccine damaged ASD children or a single vaccination damaged ASD child – I’ve seen both. I cannot advocate anything other than a slowed schedule for the younger sibs of a non-vaccination damaged older ASD sib, as I’ve seen those too (I would advocate this schedule for any of my friends’ children).

Unfortunately, the data on the study you propose, non-vaccinated younger sibs, won’t be that simple or strait forward.

Many of these future non-vaccinated baby-sibs will be in their mother’s body at the exact wrong time. Many will be gestated in a post-diagnosis hell/early intervention of the first child craziness (sending the mother’s immune system to the toilet). The resulting sibling’s data from the get-go is far different from their older sibling.

My first (ASD) child had a Standard American Diet/pregnancy, where I didn’t take any environmental exposure seriously.

If I had more children, thier gestation data would be VERY different yet again, relaxed, healthy, organic, hormone meat free, walks, yoga, meditation, clean water, filtered air, no plastics at all, you name the exposure to avoid, perfect pregnancy. This will not happen – we’re broke and too old.

So, the EARLI study will have a very difficult time teasing out all of the data. I fear that many baby sibs have a high ASD rate precisely because their mothers are under so much stress, resulting in a very damaged uterine environment.